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To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education: A Patient's Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Design to thrive
Jane Nemke shares how she applied universal design principles to renovate her condominium so that it was easier for her to live in as her FSHD symptoms progressed. Her goal was not merely to improve accessibility but to create a living environment where she feels she will thrive. Previously on this blog, Jane shared details…
We are convening the world this month in Orlando, Florida
Global stakeholders are meeting at FSHD Society conferences The FSHD Society is holding back-to-back meetings this month in Orlando, Florida, to convene patients, families, researchers, clinicians, advocacy leaders, industry scientists, and regulators from around the world to focus on the…
Upcoming Events
CarePartner Hour – We need a vacation!
Zoom Virtual Meeting8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Caring for someone with a disability can feel like a 24/7 situation. Even when you are not literally assisting your loved one, you may feel you can never relax. You become hypervigilant about avoiding accidents. Everything involves planning. So as we...
Women on Wellness – Transitions in mobility
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t...
Wellness Hour
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.